Jukie Life Lessons

One of Davis, California’s claim to fame is that there are more PhD’s living here than in any other small town in the U.S. I have no idea if that’s true. But there are certainly a lot of smart people living in this university town. In 2006, CNN Money Magazine ranked Davis as the second most educated city (in terms of the percentage of residents with graduate degrees) in the United States.

And when I look around at the Farmers’ Market each Saturday morning, the population seems to be divided equally between parents and children (oh, and about 25,000 college students). Davis boasts one of the strongest school districts in the state, so it’s no surprise that one finds a tremendous local focus on our smart kids. We’re like Garrison Keillor’s Lake Wobegon, where all of the children are above average.

For the most part, living in a town with so many engaged and involved parents is wonderful. (I’m married to one of those UC Davis PhD’s.) But, there’s another side to all of that near-obsessive focus on our children’s academic lives: it’s intense. Kids certainly feel this pressure to perform to their parents’ high expectations. And parents feel the competition between each other. I have overheard many typical Davis conversations over the years featuring parents of preschoolers who wonder which path might take their child to an Ivy League school, or who agonize over whether or not to place their child in a self-contained GATE classroom (gifted and talented education). Truthfully, I have been involved with some of these discussions. I also struggle with finding the right balance between obsessing over a child’s academic performance versus providing support while following a child’s lead.

Perhaps I have an edge that others don’t. For, when I find myself wondering if my twelve-year-old daughter will get into Stanford, her nine-year-old brother, Jukie, quickly slaps me squarely into reality. Jukie won’t be going to Stanford, or to UCD, or to any university. And, truly, none of that matters, as I’m often struck by this simple truth: Jukie is the wisest person I know. He has many Life Lessons to teach the rest of us. His lessons aren’t taught at any school. Those who are privileged to know Jukie will learn just by spending time with my boy.

Start each day anew, with a clean slate. Jukie doesn’t know from grudges. He doesn’t hold onto anger. Of course, like the rest of us, he sometimes feels anger. And he has no problem communicating his anger. Occasionally, Jukie bites or pinches to show us his displeasure, usually over complying with a request from Mom or Dad. However, his anger subsides within seconds. He apologizes to us by grabbing our hands and giving us about ten kisses.

Judge not. Imagine a world where none of the “ism’s” existed. As far as I can tell, the only criterion that Jukie uses to judge a person is kindness.

If you’re happy and you know it, let everyone know. Jukie is pure joy. He couldn’t care less whether or not expressing his joy (loudly) is appropriate. When the boy is moved to laugh, he laughs uproariously. Soon, everyone around him joins in laughing; his bliss is infectious. And just try worrying about anything while you’re engaged in raucous laughter. Often when Jukie starts to laugh like that, I forget even what I had been doing.

It’s the little things. Jukie can spend hours examining the plants in our backyard. Through Jukie’s eyes, I see the beauty in each jasmine flower. Lying on our backs on Jukie’s trampoline, Jukie and I notice the pattern of clouds above. Through Jukie’s delight, I remember the thrill of spinning on a tire swing. As he plays with my wedding rings, I take a moment to recall the day I got married, and kiss the top of Jukie’s sweet head. (I had no idea what life held all those years ago.)

Slow down. Everyone who knows Jukie knows how fast he is – the boy can RUN. But he has another speed. When he’s focused on the minute details of his world, his movement comes to a near halt. As I’m frantically doing dishes and laundry and cooking dinner, I often look out to the backyard to find Jukie sitting quietly, thinking. When I’m able, I follow Jukie’s lead and slow down. When his sister was a toddler, she used to say, “Mommy, let’s be. Let’s just BE.” Jukie reminds me to just be.

Words are overrated. Although Jukie has made great strides using his Picture Exchange Communication System, most of our communication takes place intuitively. Expert at sensing the feelings of others around him, Jukie usually knows exactly what’s going on. If the mood in the room is tense, Jukie will start to cry. If those around him are content, Jukie feels content. He is like a human barometer. Other than asking him to stop doing half the stuff he’s doing, and trying to get him to do what we want him to do, we mostly communicate our love and affection to and for Jukie. Certainly no child has ever received more hugs and kisses than he.

Expose yourself. Those who know Jukie know that he routinely exposes himself in a multitude of ways. Although he knows the rules dictate otherwise, Jukie enjoys taking off all of his clothes. He removes his pants any time he feels like it. Fortunately, his brother and sister police this behavior. “Jukie, put your pants back on” is overheard frequently in our backyard. Lately, though, I’ve been thinking about the way in which Jukie has exposed himself to us on a deeper level. Because Jukie wears no social mask, neither do the rest of us. When we are with our boy, all eyes look our way. I have learned the liberation that comes from dispensing with one’s public face. Once that façade is removed, we’re left without pretense. I no longer try to appear to be ANYthing. Why bother? I sometimes feel like Jukie and I are saying, “here I am, world!”

Never pass an opportunity to dance. Like the rest of us, Jukie hears music in his head. The difference is that he acts on it. There’s no stopping Jukie when he is moved to dance or to spin or to jump. Seeing the joy in his face, no one would want to stop him. Anyone traveling through Davis may encounter a cute little redhead and his mom dancing around the parks.

The White House belongs to everyone. For the most part, Jukie is met with kindness and interest by strangers he encounters. However, sometimes, I get the feeling that people wish a kid like Jukie weren’t taken everywhere. We’ve gotten the “look” at the movie theater, art galleries and restaurants. And this is where the mama bear in me rises up. Jukie has the right to go anywhere the rest of us go. Surprisingly, he often behaves better than other kids. A while back, while visiting Washington DC, my own daughter suggested that Jukie might not be allowed to enter The White House, asking, “Mom is Jukie allowed in The White House??” Pretending that I didn’t know why she was concerned, I responded, “why not – they have his social security number, just like the rest of us.” If I were to keep Jukie out of any potentially challenging situation, he’d never go anywhere. How will he learn to behave appropriately if not given the chance? And how will those who are not fortunate enough to know a kid like Jukie learn to appreciate him and others like him? (For the record, Jukie did pull a few Jukie-stunts in George Bush’s White House. I’m sure he’d have been much better behaved had we visited during Obama’s tenure.)

Take care of each other. Because Jukie needs more care than most, Jukie’s brother and sister are learning an invaluable lesson – that we all take care of and look out for one another. They learn kindness and empathy way beyond their years. Such a gift.

Other obligations can wait when there’s fun to be had. Just when I think I know how I am going to spend my morning, Jukie will grab my hand and drag me in the other direction. Jukie is always in the moment. And, I never, ever regret following him.

Life is about love. A great misconception about people with autism is that they don’t connect with others. In truth, they do connect; it just looks different. And, if fact, Jukie’s single greatest goal each day is to be with the people he loves. He kisses our arms and stomachs constantly. He wants to be held and tickled. As I tuck him in bed each night, the sweetest part of my day, he pulls me close, grabs my arms, wrapping them around him. Kissing his sweet, soft cheek, I silently thank him for everything he gave me that day.

No Small Victory

Often my life feels like a series of small victories. Mothering three young children requires a lot of negotiations. And while I hope for win/win scenarios where the kids and I feel equally satisfied with the various outcomes of these negotiations, in the end, I’m still looking for victories. One of the nicest benefits of 12 years of Mom-experience is that I’ve learned which battles to pick, and what’s truly important.

As soon as the alarm sounds (usually in the form of four-year-old Truman climbing in bed next to me, laying his hand on my cheek and whispering, “Mommy, are you awake?”), the quest for victory begins. We start with the three kids to get out the door to three different schools at three different times. I cross my fingers that picking out their clothes will be smooth. It seems that Truman only wants to wear STRIPES, and of course no stripped clothes are clean! “Maybe just for today, you can wear a dump truck shirt,” I offer. Geneva, who is 12 years old, has an aversion to most socks; they never feel good on her feet. So, I hope that each morning her socks will go on her feet without my hearing about it. And as a family, we negotiate with and overcome these sorts of obstacles all day long. What? Truman thought that it was HIS turn to close the garage door? More negotiations ensue. Next time, Little Man. What? You don’t have to go to the bathroom? Well, we’re going on a three-hour car trip, so how about you get in there and use the potty anyway.

Of course, I’ve learned the fine art of giving the kids the illusion of choice. When they’re young, it’s, “do you want to drink from a blue cup or a red cup?” Either way, they’re drinking what I’ve chosen. With the oldest, it’s, “would you like a sleepover Friday or Saturday night?” The goal was one sleepover night, not two, as would otherwise have been requested.

And with my sweet, special Jukie, victories are non-stop. Much of my time with Jukie involves my simply trying to control the chaos while allowing him as much freedom as possible. We’ve put a lot of thought and energy into exploring how we as a family can coexist happily, with as many win/win outcomes as possible. And when I’m on Jukie-duty, the negotiations are active and constant. As a result, I rarely sit down at home. Who needs a gym?

Perhaps these constant tiny battles prepare me well for the big ones. A few weeks ago, I went to war against Jukie’s county regional center (Alta California Regional Center). As you may know, in California budgets everywhere are depleted, so perhaps we should not have been surprised when Alta informed us that they would no longer be funding Jukie’s Care Trak monitoring system. This system involves an ankle bracelet which emits a radio signal so that Jukie could be tracked by the local police department everywhere he goes should he escape again. Because Jukie has a history of running away, this anklet is vitally important to his well-being. After telling us that they were planning to cancel support for the program (which a local activist and Mom raised the money to initiate), Alta offered a series of silly compensatory suggestions: that we install an elevated lock on the front door, that we try “behavior modification,” and that we employ “direct supervision.” Gee, why didn’t WE think of any of these helpful hints?! I hope my sarcasm is evident. Anyone who has ever met Jukie for five minutes would have been able to assess Jukie’s skill at climbing and at defeating that front door lock tactic (as he began to do in preschool). And behavior modification? We’ve been modifying Jukie’s behavior with the help of every professional we can get our hands on for nine years now. Alta’s suggestion that “there is no substitute for direct supervision” felt like an especially cruel joke. My response to them was, “we are HUMAN. We do require sleep each night!” Of course, we directly supervise our boy every minute of the day! He even sleeps with a night-vision video monitor on his bed. With all of our vigilance, Jukie has still escaped – twice!

Round one: my husband Andy and I met with Alta representatives for an “informal meeting” to try to come to a resolution without involving the courts. Because we believed that Alta would listen to our reasonable argument, that the agency should continue to fund the monthly cost of replacing the batteries and straps on his ankle bracelet, we agreed to this meeting. That’s not a mistake I’d make twice. Alta’s legal consultant sat in and acted as judge, an “impartial arbiter” I think she called herself. Huh. This didn’t bode well, but the woman seemed friendly enough. We brought with us the coordinator of the Care Trak Program, a wonderful police officer named Michele. Along with us, she spoke of the necessity of Care Trak, and demonstrated the pings coming from her monitoring device, which belong solely to Jukie. Did I mention that we brought Jukie? If the Alta folks were to understand our argument, they’d need to see and meet Jukie. Surely, they’d conclude that he needed to continue to be monitored through the Care Trak. The meeting took about an hour, during which time Jukie ran around in circles, tried to climb the blinds, untied everyone’s shoelaces, tried to escape the room, and ate from the trashcan. You GO, Jukie! Show them what'cha got! And let them see what a precious little boy you are, so worthy of tracking.

As we left the building that day, I said to Andy and to our trusty police officer, “I’d be shocked if they didn’t rule in our favor.” One week later, we heard Alta’s decision. They did not rule in our favor. Did we still want to pursue this, they asked? I imagine that at this point many parents would quite understandably give up. These sorts of battles require large amounts of time, energy and perseverance. Taking the matter to court before a judge can feel incredibly intimidating. Did I want to pursue the matter? Absolutely! Pursue!

Round two: once again, Andy, Jukie, our police officer and I reconvened, this time, sworn in, speaking into microphones, and before a judge. To our surprise, our Alta opposition this time was lead by that former “friendly” and “impartial” legal consultant. Now she is acting as prosecutor, using against us every argument we made at our “informal” meeting. Andy and I have no law background (unless you count watching an occasional trial – hello OJ – on TV). We had thought we’d just be explaining ourselves directly to a judge. Instead, we found that our hearing would be conducted like a real court case, which, I guess it was. Opening statements! Called witnesses! Cross examinations! Objections! Quickly realizing that Andy and I were out of our comfort zone (not to mention our league), we decided to step up and act the part. “How about I play lawyer, and you play witness,” Andy whispered. Fortunately, Andy is a seasoned public speaker, quite used to running meetings. And of course I knew the ins and outs of our case. We could do it. While Alta was presenting their case against us, I feverishly wrote down a long list of questions for my husband/lawyer to ask me.

Alta began making the case that because Jukie wears a MedicAlert bracelet, funding the Care Trak monitoring system would be a duplication of services. Again, we heard about the importance of direct supervision. Our “friendly” prosecutor pointed out that I had turned down a referral for behavior modification, which she somehow made sound terribly irresponsible of me. We couldn’t wait for our turn to speak! Soon enough, Andy was cross-examining Alta with fabulous questions, such as, “is Jukie wearing a MedicAlert bracelet right now?” They couldn’t say, for as the woman from Alta was forced to admit, she could not see the bracelet under Jukie’s sleeve. “If you saw Jukie sitting quietly, playing alone in the sand at a park, would you know immediately that he needed intervention?” he asked. “No,” she admitted, she would not. Sitting alone, playing quietly in the sand is exactly what Jukie was doing when he was found after he climbed our fence and ran a mile away to a favorite park.

When it was our turn to testify, I pointed out that the MedicAlert bracelet kicks in when Jukie is found. The Care Trak anklet is activated the moment he is lost. Jukie doesn’t speak. He doesn’t fear traffic or people or most any other danger he should. I told the judge that Jukie had proven his own case. He had already demonstrated the importance of tracking him. There was much more to our argument that I won’t go into here. His police officer testified again. The whole case went on for over two hours.

A funny thing happened when we left the court that day. I felt exuberant. Whatever happened, we felt as if we had already won. Andy and I came together over yet another (unexpected) bonding experience. We ultimately enjoyed “playing lawyer” by reading each other’s minds to make up for the absence of preparation (22 years together helps), and using each other’s strengths. We stood up for (and WITH) Jukie and for all of the children in the county who use the Care Trak system.

As I walked into the post office the other day, I knew that the certified letter waiting there must be from the court. Letter in hand, I ran back to my bike and decided to wait to open it until I arrived home. But, I didn’t make it home; I couldn’t wait. Instead, I stopped at a bench on the greenbelt and ripped open the envelope. The first words I saw were, “claimant’s appeal is GRANTED.” We won. Jukie won. Yes, precious boy, you won. You are so worthy of tracking. I will follow you everywhere.

SuperSibs

Soon after Jukie’s diagnosis with Smith-Lemli-Opitz Syndrome, someone close to me said, “you’ll need to watch that Geneva doesn’t get overlooked,” a common concern in families with children with disabilities. I hadn’t yet thought about how life with Jukie would impact his sister; we were still reeling from the news. Of course, all sorts of concerns regarding the “typical” siblings are warranted. Siblings may receive less time and attention from parents overwhelmed by the needs of the child with the disability. Often siblings assume a prematurely adult role in their family. And then they often must take on additional responsibilities as sibling advocates and disability educators.

I can’t say that I haven’t felt these expected concerns about Jukie’s siblings, but I am also keenly aware of the benefits that my “typical” kids realize from having a special brother like Jukie. Jukie has an older sister named Geneva and a younger brother named Truman. One (probably both) is a genetic carrier, but neither was born with SLO Syndrome. They have learned important lessons, and are sometimes asked to do more for the family than are their friends, but one thing these “bookend” kids will never be is overlooked. Because of Jukie’s needs, Geneva and Truman are required to have more patience, sympathy and tolerance than most kids towards their siblings. It is because of this requirement that Geneva and Truman have a deep sense of empathy for others. Jukie schools the bookends, and our bookends are great students.

Of course, my husband Andy and I have schooled the kids as well, buying them books about having a sibling with a disability. Geneva especially devoured them. Some of her favorites are:

The Sibling Slam Book: What It's Really Like To Have A Brother Or Sister With Special Needs, and Views from Our Shoes: Growing Up With a Brother or Sister With Special Needs, both by Don Meyer

Everybody Is Different: A Book for Young People Who Have Brothers or Sisters with Autism, by Fiona Bleach

Rules, by Cynthia Lord

And the kids watch their dad and me field questions about their brother. Every time I answer a stranger’s inquiry regarding Jukie, my response is geared as much for Geneva and Truman as it is for the person asking the question. What a joy it is now to hear Geneva as she steps up as an unofficial ambassador for people with disabilities, for she knows and asserts that disability is natural. I have heard her explain that Jukie is not SLO. He was born with SLO. He is not autistic. He has autism. She knows that Jukie is not his diagnosis. He is a person first. Geneva effectively reframes the conversations so that others come to understand that Jukie is first and foremost just a kid like any other.

As much as I love to connect with other parents of kids with disabilities, so too does Geneva bond with other kids with special siblings (we call such young caretakers Super Siblings). She truly identifies as a “SuperSib,” and enjoys meeting with and talking with other kids like her. They can swap stories about ways that their siblings have embarrassed them (such as the time Jukie came down the stairs and into the living room full of Geneva’s sleepover buddies… without his PANTS). Knowing how important the adult version of these friendships is to me, I am truly grateful that my daughter has also formed such friendships. Last summer, Geneva and I traveled to Boston to attend the biannual conference on SLO. The SuperSibs bonded instantly. Perhaps most heartwarming for me was watching Geneva’s eyes light up as she knelt down to talk with the kids with SLO, all of them reminding her of Jukie. Soon she and the other siblings were spending hours in the hotel pool, holding their breath together underwater, and coming up for air when they could no longer keep from giggling. I loved to see Geneva and her friends pal around the conference hotel like they owned it, taking turns hanging out in each other’s rooms, painting each other’s nails, folding origami and drawing silly cartoons. Geneva experienced the powerful feeling of connectedness when talking with people who know, who truly know our experience.

Sure there are a lot of hard parts of having a sibling like our sweet Jukie. It’s not that life doesn’t suck sometimes. I want my kids to be able to express all of the ways that Jukie frustrates and angers them. Those feeling are all inevitable and understandable. And I suppose that we could focus on the challenging parts of this journey. But we’ve made a different choice. We talk about the negatives, but then move on to the joy. In the presence of a heart (and face) like Jukie’s, how could we not?

The upsides of having Jukie for a brother are many. His siblings are required to find within themselves patience, compassion and understanding well beyond their years. When Jukie breaks or slobbers on four-year-old brother Truman’s toys, big sister Geneva sometimes intervenes, reminding Truman of Jukie’s intention. “Jukie didn’t mean to break your toy; he was only trying to see how it worked,” she’ll say to Truman. When Jukie bit Geneva hard on the stomach, Geneva pointed out to her pediatrician that Jukie got overexcited from the music Geneva was playing. Early on, Geneva learned to see the world through Jukie’s eyes.

Once when Geneva was ten years old, I picked her up from rehearsal for her performance as a cat in the Nutcracker. Her eyes were red and fiery. She was shaking. When I asked her what happened, she explained that one group of ballerinas had been calling the toy soldiers (all boys) names and degrading boys as a gender. Well, Geneva was outraged! She stood up and told the entire group of her peers that this was unacceptable. I asked her if she had been scared. “Of COURSE! But I HAD to say something!!” she said. Another time, while eating lunch at school, she heard some kids using the “R” word. My girl is so sensitive that she ran to the bathroom and cried, trying to summon the courage to go back and set these boys straight. Her friends came to her aid, and as a group they went back to address the matter. That is MY GIRL! Just about nothing could bring me more pride.

I can’t imagine a greater gift for Jukie to give his brother and sister (and Daddy and Mommy) than this gift of perspective, this deep sense of empathy and social justice that we carry out of our house and into the world. Jukie’s love and wisdom spreads far and wide.

A Valentine

I have a secret weapon. He is known in our college town as “Dr. Andy.” Just about everyone I meet seems to know him. Substitute “Dr. Andy” for “Kevin Bacon” and “Davis” for “Hollywood”, and it’s more like two degrees of separation. Life with a local celebrity is never boring and most always entertaining. But what I love most about watching Andy be “Dr. Andy” around town is knowing that he comes home with me.

A while back, I came across a divorce statistic of parents of kids with disabilities -- somewhere around 85%. Imagining why the rate is higher than average isn’t difficult. A strong, healthy marriage is vital when you have a child like our Jukie. We need, need each other. Our family dynamic and stress strengthen our bond. Disabilityscoop reports a study published in the Journal of Autism and Developmental Disorders that mothers of children with autism experience a level of chronic stress so high as to be comparable to the level of stress combat soldiers experience. This level of daily, cumulative stress affects just about every area of health and life.

In our family, we don’t even bother with modesty when we call what we do with our son Jukie: Superhero Parenting. Jukie’s brother and sister are likewise superhero siblings. As Geneva says, “we’re like the Incredibles!” Of course, this developed through necessity, rather than by design or from a radiation experiment gone awry. Families like ours have to be stronger and work together. Maybe that’s why Andy’s “Dr. Andy” persona cracks me up so much. It’s fitting that he would be known and loved everywhere he goes in Davis. I swear, he may as well wear a cape. And when he walks in the door of our home… that’s when the fun truly begins. The magic he works with Jukie is just that good. No one makes Jukie laugh harder or behave better than his daddy, the Jukie Whisperer.

Although he bristles at the description, I am, in fact, married to a nearly perfect husband. Sure, he’s a human being with flaws (and even his flaws are minor). But as a husband, Dr. Andy gets an A+ from me. And I ought to know, right?

So how does he earn this distinction? From the day we met 22 years ago, Andy has supported my hopes and dreams. He told me that he wanted me on this life-journey with him, but allowed me a little space and time to catch up to his wise view of our future together. Anything that is truly important to me is therefore important to him. Andy tries each day to make my life easier. He does this in all sorts of small ways: making sure I catch a little more sleep in the morning, bringing me a glass of water each night, or encouraging me to spend time with my girlfriends. If everyone in the world treated others as Andy treats me, the world would be in damn good shape. It adds up to one fabulous life with my super heroic husband.

On this, our 22nd Valentine’s Day together, I wish to thank my wonderful valentine for all that he does for and with me and our three children.

Birthday Boy

My little Jukie had a birthday this week. He turned nine years old. And everyone who I tell responds the same way: “NINE?? That’s so hard to believe.” To some extent, every mom hears those comments about her children; the time flies. But, as with everything else with Jukie, each birthday in this case is a little extra special.

First, there’s his size. Like all of his fellow buds with Smith-Lemli-Opitz Syndrome, Jukie is small, about the size of a five or six year-old boy. Strangers inquire all the time about his age. I guess they’re mostly trying to make sense of the sweet, unusual sight in front of them – a silly, impetuous, (ch)imp, with a shock of red hair, and a big red chewy sticking out of his mouth. “He’s nine,” I’ll now say, and watch the inquiring minds and eyes widen. The size gap between my boys (Truman, four and a half years younger) narrows each year.

I used to get depressed with each of Jukie’s birthdays. With each passing year came a reminder of the many milestones he wasn’t reaching. He didn’t have friends. Finding appropriate gifts for him has always been difficult. What do you get the boy who doesn’t really play with toys, except to break or eat them? And as birthdays never really held meaning for him, he never had a traditional birthday party. To me his birthdays didn’t seem like occasions for celebration.

Fortunately for Jukie, I’ve evolved. I’ve come to realize that children’s birthdays are also reasons for parents to celebrate. I celebrate how far we as his parents have come, and that we have survived another year with our boy. I focus on Jukie’s many strengths, on what he can do, and not just on the ways he struggles. I also see how far Jukie has come! His development is so incrementally slow that I sometimes have to step back to examine his growth. Visiting friends and family who haven’t seen Jukie for a year or more point out (sometimes with surprise or relief) those emerging strengths of Jukie’s that are sometimes hard for me to recognize. Over the last two years, he has become much more calm. He can now sit for long periods of focused time. He communicates well with PECS (Picture Exchange Communication System). He’s more engaged and responsive with us. Perhaps it sounds funny, but Jukie can be a well-behaved boy! We take him to restaurants, art galleries, concerts, movies, on airplanes… and he usually tries to behave well everywhere we go. He’s more fun than ever! And with his new habit of making kissing sounds when he waves hello and goodbye, he gets impossibly sweeter every day.

And so this last birthday was cause for great celebration. We doted on the boy all day long. Whereas he normally may average 25 Mommy kisses in a day, on his birthday he received probably 200. We served him his favorite foods: tofu with cornbread for dessert. We gave him new beloved toys which spin and make noise. And I thought to myself that all of the reasons that I used to get depressed don’t matter at all to Jukie. He already knew these lessons, the lessons which took his mommy nine years to learn.

Happy birthday, sweet, sweet Jukie! I am so lucky to be your mom.

Mommy Angst

Motherhood is bittersweet. No one can clearly prepare a new parent for the wistful parts of the journey. Before we have children, we know that some heartache awaits us. But who knew that our children’s little traumas would hurt us so much?

There’s a saying among mothers: “little kids, little problems – big kids, big problems.” I used to fear that my kids’ struggles would only grow and intensify as they grew older. You mean it gets worse? Harder?

When Geneva (who is now 12 years old) was in nursery school, she struggled over issues such as what song would be sung in school on any particular day. Would it be the song about the baby ducks swimming away from the mother duck?! If so, everyone at school would hear her panicked cries over duck separation anxiety. I remember that we worried about whether she’d be able to keep her pants dry for 2 ½ hours at school. In kindergarten, she was afraid of the loud flush of the school toilets. I chuckle now, thinking about how we stressed over this toilet issue. We also worried that she’d forget to put on her coat before heading outside to eat lunch. And I wondered if some of the much bigger 2^nd or 3^rd graders would mow her down on the trike path.

Usually, I know what to do when faced with parenting’s little dilemmas. But now that Geneva has officially entered “tween-hood,” I’m finding more and more that I am not always sure what to do. Along with this uncertainty, I’m feeling angst about my role and about our mother/daughter relationship.

Last week, Geneva spent a week at outdoor education camp. We had never been separated from each other for more than a night. While I was happy to let her go and experience an opportunity to live and cope independently (not to mention experience the wonderful curriculum), I found living without her for that week to be more bitter than it was sweet. I’m still not sure which of the two of us suffered more anxiety. I wrote her a letter to open each day. I hid a couple surprises in her suitcase. What and odd feeling, not knowing how she was doing each day. Of course the goal of parenting is to teach your child how to need you less and less. We’re supposed to prepare them for the day when they will fly the coop. But, I didn’t exactly enjoy this preview. I couldn’t WAIT to pick her up on Friday. And when I did spot her at pick-up, I saw the biggest, prideful smile.

This week, Geneva’s first pet is dying. Parsley the Hamster has perhaps experienced the most love and attention of any black bear hamster in recorded history. All of her care and the money for her needs have been provided by Geneva. She dotes on her daily, but Parsley’s still dying. And there’s nothing I can do to fix it. Any mother would gladly take on her daughter’s heartbreak to keep her from experiencing such sadness. If only it worked that way. Watching my children struggle may just be my biggest challenge as their mother. Knowing that I can’t fix it, and often even worse, that I shouldn’t fix it, and knowing that they need to learn to handle their own difficulties, I have learned that I need to step back at the moment that I want most to step forward. I remind myself that my gradual letting go will help these three increasingly resilient children grow into capable adults. Does this realization lessen my Mommy Angst? Not so much.

Mother Warrior

It’s a good thing that I was raised to fight. Sandwiched between two brothers, the three of us within only 2 ½ years in age, I learned early to stand my ground. As my parents divorced when I was in first grade, my brothers and I learned to survive in two different households, one in the suburbs with our mom, and each weekend on the Southwest side of Chicago with our dad. That kind of early experience will toughen a kid, and it did me. By the age of 12, I was taking trains and buses all over the city, often by myself. I knew how to navigate my way around Chicago, which means I understood that different neighborhoods required different behavior. I knew which areas I had to avoid altogether, and in which areas I had to be hyper-vigilant to guard my safety. In addition, my parents made an effort to take us everywhere, exposing us to all sorts of different experiences. I spent most weekends exploring some part of the city: the museums, performance spaces, parks and restaurants.

When it came time for college, I didn’t choose any easy path. I chose Antioch College in Ohio, which required that students move each quarter to “co-op,” that is, to complete an internship as part of their education. We’d study on campus for a quarter, leave to co-op the next quarter, and return back to Ohio for more study. Summers were spent co-oping as well. As if that weren’t enough, most of us studied abroad, as I did in London, England (where I met my fabulous husband). Although I remember feeling keenly aware and occasionally frustrated with the sometimes difficult path I had chosen, I knew it was the right one for me. I learned a tremendous amount, perhaps most importantly about mental toughness.

A friend of mine lamented the other day that as a stay-at-home mom she was “wasting” her education, and not using what she had learned. I would guess that most SAHMs struggle with this “waste” at some point. (Fortunately, my degree is in Psychology, which I have ample opportunity to use every day! Had I studied plant biology, maybe I’d feel more conflicted.) But, I see it differently. Nothing that we have done is a waste; it all forms us into who we are. Our experiences make us US.

And that brings me to the point. I am thankful for my tough upbringing because I draw on it just about every day. All moms are warriors. Mothers of kids with special needs are super-warriors. There are so many large battles – for health insurance, with school districts and sadly, for our kids’ very lives. But often the little battles are almost more difficult. Usually, no one is there to help support a mom when she’s fighting the small fight, and it’s not always clear how to proceed. The other day, I took Jukie for a haircut. I stood right next to him and offered to help the hairstylist in any way that I could. About half-way through, she stopped and announced, “well, that’s not the best haircut I’ve ever done, but it’ll do.” WHAT? It looked terrible. And Jukie had been using great behavior. All I can imagine is that this woman figured that it didn’t matter so much what his hair looked like. Sure, Jukie wouldn’t have cared. But, I certainly did. So I insisted that that hairstylist pick up her scissors, get out the clippers and give him a proper haircut JUST AS SHE WOULD FOR ANYONE ELSE. I shared this experience with the mom of a “typical” child, who remarked that she’d never have had the courage to ask the woman for a better haircut. Another example: Jukie sees a wonderful pediatric dentist. But, while the dentist was content to imagine that Jukie’s teeth were healthy since his sister’s teeth were, I had to insist that he actually examine them. I understand that the dentist didn’t want to traumatize Jukie. But, I also think that the dentist imagines that Jukie doesn’t need or deserve what other kids get. That infuriates me. Now Jukie’s every successful dental exam leaves me smiling in pride. Jukie can do it, I think to myself; give him the chance.

This same inner strength is needed every time I take Jukie out in public and encounter some overly curious person who just can’t help putting her foot in her mouth. Once at Costco a woman slowly followed me throughout the warehouse as Jukie screamed his head off, and acted in a typical Jukie fashion. I’d have thought it was my imagination except that she finally approached me and asked, “what’s WRONG with him?!” Fighting the urge to ask what was wrong with HER, I replied, “Nothing. He is Jukie.” My daughter laughed, I smiled at the woman, and we were on our way.

Last year, we took Jukie to the White House. Perhaps that seems almost ridiculously ambitious. As we were on the Metro heading to Pennsylvania Avenue, big sister Geneva asked, “so…um…is Jukie ALLOWED in the White House?” I chucked and said, “of course – EVERYone is allowed.” True, I almost ate my words when Jukie tried to run into the roped-off rooms, tear the pictures off the walls and reach for a sharpshooter’s rifle (all true), but he walked out with the White House still intact. We all high-fived each other and felt great pride in Jukie’s success (though if anyone’s White House deserved a little Jukie vandalism, George Bush’s did). Jukie deserves no less than any other child. And I will never stop fighting to make sure that he receives the same treatment the rest of us would expect.

As we’re heading into a Season of gratitude, I find myself thinking daily of everything for which I have reason to give thanks. Today, I am grateful for my tough childhood, knowing that it groomed me perfectly for my career as Mother Warrior, especially because I have a kid who demands more protection than most.

Second Family

By the time Jukie was diagnosed at twelve months of age, we had already spent one year with our “typical” baby. He was going to grow up, go to college, get married, and probably have a family of his own. And before that, he was going to play on a soccer team, attend his big sister Geneva’s school, and experience the usual childhood that everyone takes for granted. Instead, just before his first birthday we learned that he was born with a serious and rare metabolic disorder called Smith-Lemli-Opitz Syndrome (or SLO). Wow. It was Thanksgiving weekend when we got the phone call; we were in Las Vegas to spend the holiday with family. In shock, I tucked that news into a compartment in the back of my mind. And the genetic team encouraged us to live in this compartmentalized denial. They told us that Jukie was so unusual for the syndrome that it made no sense for us to learn anything about it. And, hey, if the specialists thought I should bask in denial… who was I to argue? I could ignore devastating news if that’s what was asked of us. And it was – so I did.

After a few months, I slowly started to realize that the medical team was wrong. Jukie WAS seriously impacted by this syndrome, and I had to face it. So, I did what I do best: I started building a community and a system of support. I began regularly meeting for dinners with other moms of kids with special needs. I loved getting to know these women, and found sharing stories, hopes and fears immeasurably helpful. But something was missing – the other parents of kids with Jukie’s diagnosis. SLO is so rare that there are only a handful of (known) families touched by the syndrome in each state. The problem was that I didn’t feel that we belonged in that community. In just about every way, Jukie was unusual, for, unlike other kids with his syndrome, he was meeting his developmental milestones. I thought that the other SLO families would have a hard time accepting Jukie. And, honestly, I was afraid that contact with families whose kids weren’t doing as well might depress me.

Everything changed when I received a phonecall from Fargo, North Dakota. The call came from a woman named Gretchen who had read something I had written on the internet about Jukie. I could hear the agony in her voice. She thought that just maybe her son Markie had what Jukie had. I heard a kindred spirit and loved this woman instantly. In some odd way, I felt as if we had known each other forever. We talked for hours. Even though the Mayo clinic had told her that Markie didn’t have SLO, Gretchen and I consulted with each other as two laypeople (Mommies!) and concluded that he did. To make a long story short, he was tested again, this time positive for SLO.

And that’s when my life started turning in a new direction. Gretchen and I talked endlessly on the phone, giggled about our silly similarities, nicknamed each other “Toots,” and understood each others’ lives like no one else could. In league with my husband Andy, Toots flew out to California to surprise me and visit for a long weekend. We hugged and cried in the street when we met. It felt like meeting a long-lost sister. Family. And somewhere down our lineage, we truly are family, for Markie and Jukie both have a rare mutation for SLO that only two others in the world are known the share, the M1V. What are the chances that one M1V Toots in Fargo, ND would find another M1V Toots in California? No chance. We know that we were meant to connect.

Four years ago, I didn’t know anyone other than Jukie who had SLO. Today, I know many, and truly cannot imagine where I’d be without my SLO family. We KNOW. Nothing needs to be said, no explanations necessary in order to understand each other. I feel as though all of the kids with SLO are nieces and nephews to me, and cousins to one another. Any of us would do absolutely anything for another SLO family member. And we speak shorthand. In fact, we even intuit with one another quite a bit. I once sent an e-mail to Toots mentioning a concern that I had about Jukie. The phone rang not five minutes later – at 11:00 PM. Toots sensed my anxious mood and knew to call, and I burst into tears the moment I heard her voice.

Technology enables us to participate in each other’s lives so much more than ever before. More than anything else, what I love about Facebook is that it has deepened our SLO community’s connection. We follow the kids’ and each other’s daily lives as if we were all just down the street from one another. So when Melissa writes that Carson is finally taking the bus to school again after a long hiatus following foot surgery, we cheer him on, knowing the struggle to get there. When Blossom isn’t herself, I worry about her health AND the sanity of her mama, Lotus, who is home taking care of her. I wait for pictures of Blossom smiling again, and know when I finally see happy photos, that things are better. Although there are so many more families than I can mention here, I want to say that I LOVE YOU ALL! You mean the world to me. Thank you – for EVERYthing.

Jukie will never read these blog entries, this record of our Jukie discoveries and hopes. And although that Thanksgiving phone call eight years ago was difficult to answer, with this blog I remind myself that I so appreciate all the lessons Jukie and his little SLO cousins have taught me. Who could have predicted that such a little guy would have so widened my world!

Dreaming of Italy

Eureka! I got a gift this week. While I slept, I had an “ah HA moment.”

We’re all so wise when we sleep. Our dreams show us all sorts of wisdom that we didn’t even know we had. Somehow, our unconscious mind holds answers that we just can’t see in our waking lives. In fact, one might say that our dreams channel our unconscious, speaking directly, trying to communicate that which we need to see or to learn. Because my dreams have been so magical and instructive, enlightening and sometimes surprising, I’ve learned to listen to this knowing inner voice.

The other night, I dreamt that my husband Andy and I had a trip to Italy planned. Italy – the intended destination in the Welcome to Holland piece! The conflict in the dream arose when we couldn’t get there. Hmmmm… couldn’t get to Italy… no surprise there. Most of the dream involved our trying desperately to make it to the airport in time for our flight. We miscalculated the time. Our transportation didn’t show. We got lost. It was one thing after the next… until a phone call. Someone explained that we could get there immediately as long as we LEFT OUR BAGGAGE behind. And so we did, and I awoke as our plane was taking off for Italy. Wow. But, what does it mean? What’s the message I’m supposed to learn?

Unlike the couple in Welcome to Holland, I wasn’t moving to Italy in the dream, just trying to vacation there. In fact, I DO escape to Italy from time. For me, I am in Italy when I am free of the stress associated with being Jukie’s mom. One thing I’ve learned over the years is that trips to Italy for parents of kids with special needs don’t just happen. Rather, we have to actively manage our lives in order to travel there. And what does that mean? Self-care – we have to learn to take care of ourselves. We so lovingly and expertly care for our children. But we need care too. When I take care of myself, I’m in Italy.

For me, this realization is one of the secret gifts from Jukie. He has taught me the importance of taking care of myself. If I didn’t, I fear I’d be swallowed up by all of his needs, completely consumed by his need for 24-hour supervision, patience and energetic mothering. If he were a “typical” kid, I’m not sure I would have understood this. But, he’s far from typical; I HAVE to reach for the lifesaver.

But what was the dream trying to tell me that I was missing? What’s the baggage that I’m supposed to leave behind? That’s easy: it’s guilt. Remember that in the dream I could not even GET to Italy with my baggage, let alone enjoy the trip. Most mothers experience some amount of “mom guilt.” I’d say that mothers of special kids take on more guilt than others. Our kids need a lot of intervention (therapies, medical visits, school accommodations) which requires huge amounts of time and Herculean patience and energy. Life so often feels overwhelmingly difficult. Naturally, we fear that we’re not doing enough to help our kids. We’re afraid that if we’re not enjoying our role on a particular day, we’re not good moms. Do you know what I think my wise little redhead would say if he could? “Get over it, Mommy.” For Jukie knows that Mommy is happier when Mommy has had some time for herself. And I know that in order to be the best mother I can be, I need to focus on myself in addition to my kids. Seems obvious, right? Then why do so few mothers carve out the time that they need? That mom guilt is a bitch.

I’ve learned to take care of myself in all sorts of fabulous and fun ways. Several times a week, I share a meal with a girlfriend. I see every good movie in the theater, and have season tickets to my favorite theatre company. I get pedicures because it feels like a wonderful small luxury. Most importantly, I give myself the gift of time. Whereas I used to feel I should do everything for/with Jukie, now I’m able to step back and let others help. Of course, I don’t completely have it down. I still feel that guilty twinge now and then. The dream surfaced to remind me that I’m not in Italy if my mind is elsewhere. It’s OK to put down that baggage and get on the plane.

Thank you, Jukie.

Now it’s time to book another flight!

Throwing Glass

“Was it clear glass?” The doctor removing the glass imbedded in my finger was explaining that clear glass is hard to see. I told her that it was clear, and that if she turned my finger the right way in the light, she’d see it shine through the hole it left behind. “Don’t mind her,” I said to the doctor, pointing with my non-maimed hand at my daughter Geneva who was taking pictures of the procedure. I explained that we like to document the crazy antics of my son Jukie. “It helps us to see the humor,” I said.

So what was it THIS time? Jukie’s newly acquired habit is throwing glass. Yep, GLASS. He prefers to throw drinking glasses, but in a pinch he’ll choose a ceramic tea party set of his brother’s or a picture frame. After he threw a cocktail glass to the ground in a Baltimore bar last month, he and his dad were asked to move next door to the adjoining restaurant. “He didn’t mean to,” the bartender said, clearly not believing what her eyes told her. (What moving to the restaurant was supposed to accomplish, I am not sure.)

Of course, he does mean it, for he loves the effect as his chosen projectile smashes to the slate floor, spraying glass everywhere like fireworks. While this new practice sounds like a hostile act, most often Jukie is happy and filled with silly “Jukieness” prior to the sneaky deed. He waits until whoever is designated with Jukie-duty diverts her attention for just a moment and then, with lightning speed, he makes his move. He’s so fast that it’s nearly impossible to stop him.

Like Kali, the Hindu goddess of eternal energy, Jukie loves destruction. Of course, he doesn’t see it that way; he has no thought of the consequences of most of his actions, such as my collecting glass shards with the dust broom, a wet paper towel, and my fingertips. To him, the delight seems to be more in the immediate cause and effect. And the effects of these effects have been rather expensive; sometimes we joke that we need a separate homeowner’s insurance policy just for Jukie. Over the years he has:

Torn many items off the walls
Ripped the handle and deadbolt off the front door
Pulled his curtain rod out of wall (leaving a large hole)
Yanked the toilet paper holder out of wall (leaving a small hole)
Chucked many items down the stairs (including Geneva’s violin)
Whipped things at the ceiling fan to watch them hit and fly in all directions
Broken multiple lamps
Flushed God-knows-what down the toilet – necessitating its replacement
Thrown various fragile items at the ceiling
Bitten Geneva on the stomach while dancing happily with her
And, of course, the recent classic: feeding 3 boxes of wipes into his fan (see photo below)

Of course it’s often maddening to be present during Jukie’s whimsical demolition, much less the recipient of it. But, I can also understand it. Jukie has little say in where he goes and what he does. He has to rely on us to interpret his thoughts through just the few words which he communicates through PECS, or mystically via our special psychic connections with him. So often it’s hard to be Jukie. I get his need to blow off a little steam, and evidently nothing livens up the house like a little shattered glass! And really, who wouldn’t love to throw some glasses at the floor now and then. As we finish yet another kitchen cleanup, we wonder what will last longer, our remaining glassware, or this new tradition of Jukie’s, one that makes him as happy as a new groom, crushed glass underfoot, and the joyful words “Mazel Tov” hanging in the air!